Diagnosis comes too late: football club starts fundraiser for terminally ill Lena (1)

Created: 09/05/2022, 10:46 am

18-month-old Lena Stasiak has the rare and incurable disease GM 1 Gangliosidosis.

Her big brothers play football at FC Germania Niederrodenbach, which wants to support the family with a fundraiser.

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18-month-old Lena has the incurable disease GM1 gangliosidosis.

Her brothers play football in the club.

Now he wants to help.

Rodenbach – A cozy August evening, the sun is about to set over Rodenbach.

Good friends of the Stasiak family have gathered on the terrace in front of the house.

Heidrun Domarsch, Arkadius Gorski, Agnieszka Kaluza, Gabriele Wiese-Fucker and Mariusz Stasiak sit in comfortable armchairs around the table.

The two boys romp on the trampoline, inside Paulina Stasiak takes care of little Lena.

After work, vacation time, everyday family life - that's how it seems.

But here everyone comes together to help, because the family is reaching its limits emotionally, psychologically, physically and financially.

The 18-month-old Lena, the desired child, the little princess of the big brothers, she is terminally ill.

"I still remember how happy the parents were and the two big ones were so happy about the little sister," said Heidrun Domarsch, as reported by op-online.de.

Fundraiser for family: football club wants to help - Lena suffers from GM1 gangliosidosis

Her son goes in the same class with the older brother and both boys play for FC Germania 09 Niederrodenbach in the F-Jugend.

Her trainer Gabriele Wiese-Fucker only has words of praise for the Stasiak family.

“Both sons train with enthusiasm.

The family can often be seen on the sports field and integrated very quickly into the club.

I wanted to help, but didn't know how at first." Gabriele Wiese-Fucker is very concerned about the well-being of the family, which is why she and friends started an aid and fundraising campaign.

Suddenly the group gets hectic and restless.

Father Mariusz keeps going into the house, and finally his friends.

Lena suffers a seizure, not the first today.

It takes too long, Arkadius Gorski dials 112. The ambulance is parked in the driveway, the glaring blue lights pull the neighbors onto the street.

After what feels like an eternity, the emergency doctor follows into the house.

Then it quickly becomes clear: Lena is taken to the clinic in Gelnhausen by ambulance, Mama Paulina goes with her.

Disease GM1 gangliosidose was recognized too late in Lena

Lena was diagnosed with the extremely rare disease GM1 gangliosidosis.

Very late and after an agonizing odyssey from doctor to doctor, after countless hospital stays and trips to Heidelberg to the university clinic, the family received the very bitter and very sad news about their daughter's serious and incurable illness.

"The GM 1 gangliosidosis was recognized too late," says Gorski.

"Therapies could have taken place much earlier."

It all takes a very, very long time: notices from authorities and health insurance companies, appointments with specialists and therapists.

Time that Lena doesn't have.

"We are currently urgently looking for a speech therapist after Castillo Morales," says Gorski.

Lena's parents often feel left alone - the family came to Germany from Poland

"The seizures are new." They are a new challenge for the whole family after Lena's condition seemed to stabilize over the past six months.

Arkadius Gorski is a longtime friend and supports the family in filling out the numerous forms.

“Lena and her family are entitled to a lot.

And the girl needs a lot of support.”

The German language skills of the parents, who moved to Rodenbach from Oppeln a few years ago, are not yet sufficient to really understand letters from the doctor or the authorities.

And so Agnieszka and Arkadius, childhood friends, help out and translate or take over urgent phone calls.

"Mariusz and Paulina often feel left alone by doctors who hardly take the time and overwhelmed by the applications they have to make."

Football club starts fundraiser - financial burden for Lena's family very high

Lena needs a special child seat so that she can be transported safely despite her muscle weakness.

A larger stroller adapted to their needs must also be purchased.

Even if Lena's condition is stable, the situation is extremely stressful for the family and involves great expense.

Therapy and hospital stays, long journeys get on your nerves.

Paulina is only there for the children, Mariusz is the sole breadwinner.

The Rodenbachers are very concerned that the young family is also financially overwhelmed by the situation and at the same time want little Lena to receive all the support she needs.

Children with GM 1 gangliosidosis usually die by the age of three - that's what the appeal for donations says.

Anyone who would like to support Lena and her family can do so via the FC Germania 09 Niederrodenbach fundraiser “Help Lena and her family” and transfer money to the Lena Stasiak donation account, DE 36 506 500 23 0155 0822 33.

(Ulrike Pongratz)

In the neighboring town of Langenselbold, Rodenbach, a young father died and collected for his family.